That feeling you are betraying your parent...

When I first needed to started staying with mom 24 hours (she was living with my step father) I stayed at their home, 45 minutes from mine. My mom would be sitting in her own home, where she lived for over 30 years, and say that she wanted me to take her home. That is just a common mantra. Home for a PWD can mean a childhood home, their first adult home, or possibly it refers to just a place of comfort. And I think it can mean something different to each person and can even change based on the moment. Coming to this realization helped me to make the decision to move my mom to my home. For multiple reasons, it made my life easier and was actually best for my mom. You made that same tough decision... Just be aware that she may be saying the same thing even while sitting on her furniture in her apartment. You are doing what is right to keep her safe and healthy.

Tell her they are putting a new roof on the apartments... Or it is being remodeled ... Or the doctor says she needs to stay here for a while.... Any thing that works.

My mom can only occasionally get out a coherent statement and it is still often "I'm going home" I reply, "Can I come? Let's go in the morning, or next week." It calms her. I tell her things we liked to do together, what we would see if we went, etc.

Much luck

You have to go with the pragmatic daughter now. This is the point where the translation to care needs to be made. I did it recently with both parents after major crisis hit. The relief of getting them safe in a good place is much greater than the guilt. It’s been just over 3 months now. It was tough sledding but they’re adjusting to the new reality finally.

I know how you feel. You may be spending many of your waking AND sleeping hours thinking about how she feels, what she's thinking, if she's ok. I realized I was doing that and that my health was suffering. I can't afford to let that happen because she needs me to be healthy and if there's a life after this, I want to have some. Could you just tell her, as I did, Mom, the doctor said you need to be in a place with more care, and so you are there now and I am SO relieved. I can relax now and you and I can spend good times together instead of being in the hospital and in pain. So hang in there, mom, and even if you don't like it as much, please know it's better for you and better for me. I'm getting too old for all the emergencies. Try this. It worked for me and it was all true.

Both my parents are now in a nursing home and we recently had an estate sale of their belongings. Even though my father had two healthy pensions in addition to both of their Social Security checks, Medicaid will have to pick up the rest, so we have to sell their house.  The estate sale is to cover incidentals and their life insurance policies. My siblings and I worked hard to clear their house and get it ready for the sale. We already have a buyer.
     My feelings about all this? Well, in the two weeks we were working in the house, all I could focus on was the work at hand. Now, I have moments of guilt and sadness because I know neither of them would have wanted their house to be sold or to have strangers buying the things it took a lifetime to accrue. My mother still thinks she can take care of the both of them, even though my siblings and I took care of them for over 15 years with increasing levels of care and 24/7 for the last seven. This whole care-giving journey has been a dichotomy of feelings. Yes, I feel guilt and sadness, but I also recognize how necessary it was. It’s just that knowing that doesn’t make it any easier.
It has just greatly impressed upon me how narrow our world can become as we age. They are living together in a small, but comfortable room, with just enough possessions for their needs or to make it cozy - photos on the walls, flat screen TV, wardrobes, chests of drawers, beds, stereo, CD player, DVD player, and other decorations. When they die, they will have even less to go into the coffin.....as will we all. What they do have are children and grandchildren who visit them and advocate for them on a daily basis. Children and grandchildren who are still speaking to each other even after the stresses of all we have gone through with trying to take care of them and keep them in their home, when they started to fail in their early 70’s.  Even though we were raised in a home marred by alcholism and mental illness.
The children and grandchildren and even great-granchildren got a few things from the house which makes us feel as if we will have something tangible to remember them by. We never expected an inheritance.
It just occurred to me. Both my father and mother received an inheritance from their parents and never did any caregiving. All their parents died within a short time of becoming disabled and infirm and at an earlier age.
       I’m sorry to make this post all about me, but I do understand your feelings. Think, as you are clearing out her apartment, “My mom is still alive, and I can go see her when I finish this”. You will have more time to be a daughter, as well as an advocate for some time longer. Endings and change are always hard, but they can be for the better.

You have the same (irrational) fear I do, that they will come to their senses and all their possessions will be gone, and that you have spent all/any money to care for them, and they (she) will be mad at you.
I can tell you from my experience, over the last 4 months, THEY DO NOT COME TO THEIR SENSES. I had to say that to myself daily, in the beginning. I still have such guilt over having their home cleaned out, items donated, items sold at auction, and items I kept because they mean a lot to me. I cried about it today... I still have to sell the house, I'll cry then too and have that irrational fear of them coming to their senses, or getting out and having no where to go, and then I will tell myself, "THEY ARE NEVER GOING TO COME TO THEIR SENSES."
Then I tell myself, "they are safe, clean, fed, receiving medical care, and I can sleep knowing they are cared for 24/7, and most of all they are together."
You will feel all sorts of emotions during this time:
Anger, grief, mourning, fear, anxiety, denial, overwhelmed... and after each emotion visits, you'll pull yourself back up, do what you need to do as a responsible adult and daughter, and get more done. Then you'll ride the wave of another emotion, and pick yourself up all over again...
You ARE doing the right thing!!

Before you do anything you might want to find out what kind of medications your mother is on and the side effects. My mother was over medicated in rehab.once her medications were changed she became better.

When I first needed to started staying with mom 24 hours (she was living with me step father) I stayed at their home, 45 minutes from mine. My mom would be sitting in her own home, where she lived for over 30 years, and say that she wanted me to take her home. That is just a common mantra. Home for a PWD can mean a childhood home, their first adult home, or possibly it refers to just a place of comfort. And I think it can mean something different to each person and can even changed based on the moment. Coming to this realization helped me to make the decision to move my mom to my home. For multiple reasons, it made my life easier and was actually best for my mom. You made that same tough decision... Just be aware that she may be saying the same thing even while sitting on her furniture in her apartment. You are doing what is right to keep her safe and healthy.

Tell her they are putting a new roof on the apartments... It remodeling ... Or the doctor says she needs to stay here for a while.... Any thing that works.

My mom can only occasionally get out a coherent statement and it is still often "I'm going home" I reply, can I come? Let's go in the morning, or next week. It calms her. I tell her things we liked to do together, what we will see, etc.

Much luck

I know how you feel. Sometimes there are no good answers, but you pick the best one. It helps to have another family member to bounce ideas around. I stored as much of moms stuff as possible, clean and neat. Tossed the junk and clutter. My mom did improve, though not quite enough to go home from AL. But as she asks for her things I have them, and if she ever gains independent living she will have familiar things.

You are also in what I call a bargaining stage. Thinking she might improve and therefore you are questioning if you’re making the right decision. I’ve been through this so I understand. We want to fix things and we want to tell ourselves they can manage and have their way. Otherwise we have to admit to ourself the sad truth that their dementia is worse and ability to have their "old life before" is gone. It’s not unusual for surgery with anesthesia and then a move to rehab to cause confusion and anger in dementia patients. They are not able to reason out why they are there often times. My dad was in rehab 4 different times. The last two were bad and he really slid downhill and his dementia was worsened by the surgery and moves. He was not allowed to go back to AL. And like you, I had to move him out and downsize and get rid of a lot of his belongings. I either moved some to my house or donated to Salvation Army. When he asks where they are my therapeutic fib is that they are in storage and that satisfies him.
 I wish the best for this transition. It is apt to be bumpy because another move is often hard on them and it can take an average of 3months to adjust. I think you know it’s the right thing but you too are grieving this change in your mom's life and probably feel you are responsible for this move. However...you are not! The choice is made by HER health condition...you need to come to grips with that. My dad is in the stage of blaming me for the move and I can’t reason with him although I’ve tried. It is a sad situation for me.

Has she been deemed clinically eligible for nursing home care? If not, please don't lose the apartment. First things first, make sure that she is eligible to stay and then cross the bridge about the apartment.

My guilty side was full of worry over allowing a person with dementia to live alone without the assistance and supervision they needed. The idea of them being safe and protected in a facility brought me overwhelming relief and joy. So, I had no misgivings about doing what I knew was best for her. Have you had an assessment to determine what level of care she needs? I'd get that worked out pronto, so you know what plans to make. I might consult with an expert on Medicaid qualification, if you think that is a possibility, as well checking to see if she has long term care insurance or other assets to pay for her care. I hope you are able to find your answers and feel better about whatever decisions you make.

Erratic Behavior sounds like a UTI to me. If Mom is in Depends and they weren't changed when needed while in the Hospital - she very likely has a UTI and possibly even a Yeast Infection - yeast can be on the buttocks too. Yeast can be anywhere and everywhere on the body.

Before you must renew or not renew, make sure she doesn't have an infection causing the irrational bahavior.

If she has dementia, she will only get worse. My husband's doctor told me it was downhill from where my husband was at and to prepare myself for the inevitable. As days go by I can see the change and each day I take one step at a time. You think that she will reverse her mental state if she goes back home. Don't count on it. You will only find that if she does go home, you will have a more difficult time to place her in a NH. We all feel guilty that we should have done more. As an example, two days ago my husband knew I was his wife and now he looks at me and asks me my name and how long will I be with him. He said I don't look like his wife and who are the other people in our home. There is no one else in our home. I am thankful that my husband is not belligerent. He is a kind man who thanks me for everything that I do for him but it's sad that he can't remember me.

Like Grammy said, tell her anything, she won't remember 2 minutes later. I am so sorry about your Mom. Don't try to reason, just go along with the illness.

Lots of comforting advice & experiences to benefit from on this site. I too feel guilty placing mom who has dementia, just a month ago after being with us for just 5 months. We tried all we could to help her adjust, it didn't make a difference. Her behavior also caused serious safety issues b/c she kept wanting to "go home" (a.k.a back to living with my abusive & neglectful brother).
Mom is "still in transition" in a very nice CH, with a VERY patient CG. I still have much anxieties over my decisions, but I remind myself "I did all I could" for her safety and well being. Be the "strong" pragmatic daughter you are!
Best of luck to you.

I can say only the following. If our parents were loving and kind to us, we probably want to do the same for them. But there is a problem: they are getting old, feeble and will most likely develop dementia. When this happens, YOU pay the price for that by taking care of them and you essentially give up YOUR life. That is not fair. Enjoy life while you can, it is far too short. Love them in every way but face the fact the issues that exist with the parents are NOT going to get better. They will only get worse. Prepare to put them somewhere where they are taken good care of. You can visit them and then keep up the loving relationship. If you don't do this, I assure you that you will grow angry, resentful and sorry you did not do this as YOUR life will soon be lost in the shuffle. This is YOUR time - don't lose it.

Ideally, every one of us wants to remain in their own home, quite possibly. However, there does come a time when it is no longer practical, safe or ethical. That's where you step in, i.e. the pragmatist. A prime example of a woman who was "a virtual eleventh-hour epic fail" was my mother. She was 93 years of age and DEMANDING to live alone in her own home in Massachusetts. Her 2 adult children (myself living in Maryland) and my brother living in California had to "be the bearer of bad news," if you will. My mother was legally blind, had congestive heart failure, atrial fibrillation, arthritis, blood pressure of 60 over 40, was falling and not telling us and was starting fires in the home. What resulted is me having to move there and disrupt my life. My response to her was "mother, you've waited too long to make ANY decision about your living arrangements; now I must live with you."
In summary, your mother CANNOT NOR SHOULD NOT "COME HOME."

My mother is suffering from advanced dementia and requires 24/7 assisted care. My brother and I live with her and we get only 6 hours/week help from an agency. Our mother has been the best she could be to us for all of our lives. There have been times when she refuses to take her meds and I have told her if she won't cooperate we will have no choice but to put her in a rest home. She says, oh no, I don't want to go. I have heard nightmares about those places. Recently I think there was even something on the news about someone hurting a man in one of those places and I think they had it on a camera. I guess not all places are the same but we are trying our best to keep our mother out of those places as we know how extremely miserable she would be there. Of course, one day, perhaps, it may be beyond our control to keep her home with us if she gets so bad that we can't care for her. But for now, we are trying our best to keep her as comfortable as possible at home with us and I know if things were reversed she would definitely not put us in one of those places. It takes a lot of love and self-sacrifice but I guess it can't last for too much longer. I only hate to see the way she is suffering and the different person she has become. But she is still so loving and sweet most of the time. If you can find it in your heart and time, think more before you put her in one of those places.

Thank you all for sharing, it is tremendously helpful to read your stories and experiences and the consistency in the threads is, in the end, making the best decision you can at the time. I was working through the reality of it as we cleaned up in her apt today, even if mom was at her "pre-surgery/NH" level, she was not really able to sort things out, she would call me in the afternoon and say "I have no idea where I was, or what I have done today", and then a few minutes later tell me she did not go to "work" (that's what we called daycare) , and a minute later make up some story about someone. Early in the day she could deflect questions, later in the day, I think conversation became harder, it was too confusing if she was tired. It has been progressive but slow...my description of mom is that she has been losing cards out of her deck. I would say 26 - 30 cards in the deck, because she can still dress, feed and is "continent" though rushing for the bathroom now. So would she be more comfortable in home?, on some level maybe, but that does not mean it is the best or most viable solution, even if I would like it to be.

I did file the paperwork for her apartment, in case I need more time to clean it out, but I think I know the reality is that even if she did not need to be in a NH, she would need to be in a facility., where she can have meals, and be with other people, if she is confused she probably does not register that the other folks are confused too.

I asked them to test for an infection and will know more tomorrow.

go the extra mile and follow your heart. You will never regret the action and hopefully you will be honored if you ever endup in mother's state of affairs.

STOP NOW WITH THE GUILT - just by asking in the manner you did shows us all you have done as much as you can - THEY ALL ASK TO GO HOME but if you question her closely she may not know what 'home' means - ditch the guilt & assume the mantle of caregiver like we all have had to do - your mom is a 3 or 4 year old with lots of extra knowledge & you never know when those smarts will arise

Your job now is to protect her & going back to her app't doesn't sound like a smart move from what you have said - our loved ones with dementia don't realize how bad their situation is [my mom was sure she could get an app't on her own when she could hardly get a glass to her mouth to drink] & I think that is natures way of self-protecting them from realizing how badly they have declined -

I take it as such for my mom & refuse to have any guilt about it rather I know I can look myself in the eye any morning when I brush my teeth with almost pride that I have maximized her life situation as much & as well as I can -

I work a lot for her to the point that her net worth is slightly higher now than when I started taking care of her 5 1/2 years ago - her aunt lived to 100 yr 7 mo so I need to keep this in mind that this care could last for years to come & if I carried a cloak of guilt around I would not be able to as effective as I am for her as her advocate

I hear many here that express guilt for doing the right thing for their parents & that accomplishes nothing as well as being a drag on your spirit - rather once that decision is made then mentally change your clothes from 'child of mom' [no matter what age] to 'protector of mom' - this will allow you to see things as an adult in caretaking role rather as mommy's little girl who always does what mommy says - that was your old role & now times have changed to your new role of the adult of the 2 of you - let her still think she has a say but don't feel bogged down by what she says because 9 times out of 10 if you asked 30 minutes later you might get a different answer

This doesn't mean that you don't treat her with the respect she deserves but rather you fudge things, you do theraputic fibs, you mislead her for her own sake, you agree to some things that you will never follow through on just to keep her as blissfully ignorant & happy as possible - no body said it was going to be easy!!

What's all this talk about guilt???? What happened to love???? My great grandparents stayed home until they died as far as I know. Yes, things were a lot different some decades ago. Things were more simple and people cared for each other instead of thinking of me, me, me. Yes, I understand the time may come when a mother or father may have to go to a NH and things may get out of our control. But when our parents have dementia it doesn't mean to go ahead and put them in a home because their memory has declined very badly. Believe me, I know how it is to be stuck in the house most of the time to care for my mom with dementia. But just today I ate a salad that reminded me of the salads that my mother used to make and I cried. She would tirelessly work for her family and be very self sacrificing. When I was sick for quite awhile she slept on the floor aside of the couch I was sleeping on. She was ALWAYS there for me!! Yes, ALWAYS!!! And now when things are inconvenient for me because of my mom being sick, do I just put her in a NH??? No! I will try my best to care for her here and allow her to have some of the dignity she has given to me. Of course, I realize things may get very very bad and I may be forced to put her in a home. But for now, I will love this frail little person who was always there for me. It won't last forever!

Maggiecat18, when our mom first displayed dementia symptoms, all 4 of us daughters worked to bring help into her apartment to enable her to stay there as long as possible. When that became unsafe and she needed assisted living level of care, my newly-retired sister took her in. The rest of us provided some respite each month. That worked fairly well, but after about a year the dementia had progressed and mobility had declined and Mom needed nursing home level of care -- which is always difficult to provide in a private home.

We found a nursing home for Mother. The sister whose home Mom lived in was devastated that she couldn't continue to provide care. She second-guessed her decision for months, and was miserable. But something strange happened. It became obvious that Mother was actually blossoming in the nursing home! She did activities. She loved the food. She felt she was not a burden on anyone. She made friends. We were absolutely amazed, and my sister's depression began to lift. Mother had 2+ years in the NH, and was content. Enabling her to be in an appropriate care center was the loving thing to do.

In retrospect it would have been unkind to not provide Mother with the level of care she needed and deserved. But it is hard to see that when the hard decisions have to be made.

There are lots of ways to show your love. Doing what you honestly think and feel would be best for your loved one is a key sign of love.

Karyll, I wonder if you realize how judgmental your post sounds. Did you mean it that way?

Do you really think that all caregivers who have decided the best course of action is to place a loved one in an appropriate care center are exhibiting "me me me" selfishness, and have no love? You admit that you may some day be forced to place your mother. Will that mean you stopped loving her, and that you are then just thinking of yourself? Or is it just other people who are selfish when they do that?

Both of my grandmothers spent their late nineties in nursing homes, about a half century ago. Neither grandfather did -- one died in his 50s, the other in his 70s, after brief illnesses. Yes, in many ways things were simpler then. Most people died from their illnesses and did not linger for decades incapacitated. But that was then. This is now. We have to deal with present reality.

There probably has never been a time in this country when there have been so many choices for caring for disabled elders. There are still some really bad people warehouses out there, but there are many caring and competent facilities, too.

In his very insightful book, "Being Mortal," medical doctor Atul Gawande explains why old models of family caring for elders forever does not suit modern realities and how encouraging it is to see many new care models being tried in our facilities. He has many specific examples, including the end-of-life story for his own father. This book might help you see things from other perspectives.

I sincerely hope you are able to continue to care for your mother in your home. But please realize that isn't the only possible loving decision.

jeannegibbs, no I did not mean to be judgmental. No, I don't think everyone puts a loved one in a NH home out of selfishness. At times, this is the only thing to do. But I do believe some put a loved one or relative in a NH to get out of caring for them, especially if the state is paying for this. I'm sorry but I have been through so much with my dear mother and at times it seems like too much for me. Just to see her suffering is killing me inside. But she still remembers her loved ones and she still knows she is living with us. If ever a NH is mentioned she starts with, no, you really wouldn't put me there, would you? She has told us when she was younger and not sick that she would rather be dead than go into a NH if ever that time was here. She is really not so much trouble for us as all she wants to do is lie down and watch tv. But of course we have to do much for her as she needs to be assisted in everything she does. Aside from doing things for her, she really isn't much trouble. It can be exhausting just having to be here and really not to have much of a life of my own. But she is a very sweet and loving person and she still cares so much for her children. She doesn't want to be a problem to us and she doesn't realize all of the self-sacrificing we have to do. She has lost weight and doesn't have much of an appetite but at times all she wants to do is eat. She has good days and bad, I guess like us all. I have a friend who visited someone in a NH and was told they are all in wheelchairs with their heads down and other negative things. Another friend put a family member in one of those places and I told her what I heard about in the previous sentence. She agreed that is how those places are, but the family member runs away and she can't control her. This is not the case with my mother. She needs help even to walk. As I have said, we are trying our best to take care of her, but of course we realize a time may come when we may not be able to give her the care she really needs. If this time does come, we may be forced to put her in a NH, as we definitely want her being taken care of the way she should.

With all said, this is truly a most sad thing to be dealing with and something that none of us should ever have had to or will have to deal with. My faith is strong and I have much knowledge from the Bible, so I have a wonderful hope for the future. I believe it is not up to us to tell others on this site our beliefs. So I will keep it at that.

I am really suffering much in my situation and the misery is so bad at times that I really feel so sick inside. No, it's not only my mother but other things I am dealing with in this horrible sick world. And no one can say it isn't sick, just turn on the news every day. I just have to busy myself with other things and get my mind on up building things.

But I do hate seeing my mother suffering from dementia and I am only trying to make things a little better for her. While I have it in my control to do so, I will. But if things change I will know I did all I could do. This is all I am meaning that if someone has it in their power to help a parent and can do this, it will not go unnoticed.

JeanneGibbs thank you for your kind comments and for sharing your experience.

My mother's nursing home was filled with folks zipping around in motorized wheelchairs, going to mocktail hour, playing cards and attending Bible study.

There was a volunteer with a cute little therapy dog, two nuns and a priest who visited every day, a hair salon and OTs, Pts and speech therapist who were available to consult as my mother's skills diminished. There a geriatric psychiatrist and later a psychiatric nurse practioner who kept mom's mental health good. There was a wound care doctor for the bedsore that never had a chance to develop once the nurse spotted a tiny bit of red on her coccyx after a bout of pneumonia. There was an audiologist, a dentist and an eye doctor who visited. There was a podiatrist who trimmed mom's toenails every six weeks.  There was a deratologist
who came in and caught a bit of skin cancer early.

There is simply NO way that we could have replicated the care my mother got in a home setting. She was far better cared for in her nursing home than any untrained lay person, even a very loving one could possibly have given her.

My brothers are engineers and I'm a psychologist. Care for a 90+ year old dementia patient with congestive heart failure, pleural effusions and a hip repair? That's a job for a village filled with professionals.

BarbB I’m impressed with the quality of care at your mom's NH. My dad's is quite expensive and supposedly top of the top here. All of the medical staff available at your mom's is unusual. May I ask where it is located?
One thing to mention regarding another poster's reluctance to put her mom in a NH, is that not all NH are horrible. And also, not every caregiver has a "sweet" parent to care for. The thing is to know your limits and not to do your own self harm in terms of your own mental and physical health. No one should judge another on their choices.

The interesting thing, Harpcat, is that it was neither highly rated nor very good at communicating. It's St John Paul, in Danbury, CT. All those people
( dermatologist, wound care, podiatry, etc.) were not on staff, but They came in as necessary to tend to patients. We had to take mom out if we needed to follow up with pulmonology, or neurology, but we realized that the benefit to mom was far outweighed by the damage being done by transporting her hither and yon.

My mom was very sweet and compliant but her care would have been overwhelming for amateurs. And I think part of her compliance had to do with the fact that these were paid professionals, not her children asking her to exercise, do speech therapy or use special eating utensils.

Thanks Barb. The NH where my dad is only has an audiologist and podiatrist ever 3months. No dentist or psychiatrist or other specialists. God help you if you need one! These are things to ask about when choosing one.